It’s one of the most incredible stories in medical science: a cure for HIV. It happened first in 1998 with Christian Hahn (a pseudonym), and then again in 2008 with Timothy Ray Brown. Both cures took place in Berlin, but involved very different scientific approaches and very different scientists.
In her new book, Cured, scientist and science writer Nathalia Holt tells the personal stories of the so-called Berlin patients, their families, and their doctors. She also delves into the complex — and still largely befuddling — science of the HIV virus, and shows how this research has influenced the cancer field.
I learned a lot from Natalie’s book and was eager to pick her brain about how it came together.
VH: You’re a scientist studying HIV. When did you get into science writing?
NH: I stumbled into it because I wanted to tell this story. It’s an important story that has had tremendous influence on HIV medicine. Yet little has been written about what these cases mean and how they’ve shaped clinical trials today. However, it wasn’t until I learned the personal stories of the people involved that I decided it had to be a book. Their stories were just too good. I had no idea when I first started working on this project how much I would fall in love with science writing. It’s hard to imagine it not being a part of my life today.
VH: The HIV field has undergone an enormous transformation since the 1980s, both in terms of scientific discoveries and in overcoming stigma. Do you think people are generally well informed about the disease today?
NH: We’ve come so far from those early, fearful days of HIV. It’s hard to imagine that only a few decades ago people living with the virus were kept out of schools, denied emergency services and even barred from some hospitals. Today, HIV transmission and prevention is common knowledge in a way we could have only dreamed of in the late 1980s. Unfortunately, the stigma attached to the disease hasn’t faded away. A recent example is HIV shaming where young men find themselves called “Truvada whores” and the dating world becomes increasingly fragmented between those with the virus and those without. Our ability to treat and cure HIV in the future is threatened by the continued stigma, apathy and ignorance surrounding HIV.
VH: That continued stigma makes it all the more impressive that you managed to get not only Christian, who has chosen to stay anonymous, but also Timothy Ray Brown and Dr. Heiko Jessen to open up about quite intimate things — their fears and hopes, their family’s reactions, even details about their sexual experiences. How did you approach them initially? Was it difficult to develop that kind of trust?
NH: Being an HIV researcher I was fortunate to get introductions through mutual acquaintances. Slowly, our relationships grew. It didn’t happen overnight. From the beginning I knew I wanted to push character development in the book; to show not only the good but also the troubling moments we all have. It was an incredible experience to have these men open up their lives to me. There’s something magical about learning all the little details that make up a person’s life. I’m very grateful for the many hours these men, and their families and friends, spent with me. They inspired me to open the book with an embarrassing story about myself. It seemed only fair.
VH: I won’t say what the embarrassing story was because everyone should go buy the book to find out.
But what about your relationships with your scientist-sources? Part of what’s so interesting about this story is the intense competition (and even, in some cases, backstabbing) among HIV scientists the world over. Do you think your scientific background and professional connections helped you when it came to asking the big players to tell you their stories? Or did some of them see you as entrenched in a particular camp?
NH: Being in the field both helped and hurt. It allowed me to get the details of fights over authorship, backstabbing and clinical trials in a way that would have been difficult otherwise. On the other hand, I entered this stage of reporting with biases that a science journalist probably wouldn’t have. I think this is where being a relatively young scientist is an advantage. I didn’t have decades of these biases to contend with so no one saw me as entrenched in a particular camp. Instead I felt like the big players I spoke with were trying to explain their perspective honestly. Writing about these tense moments wasn’t always easy but I felt it was important to show the influence intense competition can have on research, particularly follow-up studies.
VH: Your writing is often cinematic. I was repeatedly amazed by the way you were able to set up scenes to make the patients’ stories come alive. Here’s one example, in which you describe the dorm room in which Christian takes his HIV meds for the first time:
“The room had one window, awkwardly framed. It was a small pane that came down only to Christian’s chest. He looked out into the evening sky, watching the snowflakes circle down past his window and land in the yard below. The sky was dark gray, the evening creeping into daylight hours as the calendar approached the longest day of the year. Christian had been sick for six months. He had endured endless mornings of retching and dry heaves. He had suffered extreme exhaustion, could barely work, and had kept a chilling secret from friends and coworkers. Now, for the first time in months, he was beginning to feel like himself again.”
From a reporting standpoint, that’s an amazing paragraph. Can you tell me how you constructed it? Did you go visit this room in person, or see photos? Did you have a lot of interviews with Christian, pressing him over and over for more details?
NH: This chapter in particular took a lot of time. I saw pictures of the room, visited the campus, looked up weather reports (I got this idea from an interview I read with Rebecca Skloot) and chatted with Berliners about what winter is like. The moment where Christian is standing at the window is a powerful turning point for him. Although many years have passed he remembers it clearly. It’s an overwhelming memory; I watched him both with tears in his eyes and a smile on his face while describing it. We spent a ridiculous amount of time going over every detail of ten minutes in November 1996.
VH: It was interesting to read that Christian’s doctor, Gero Hütter, was nervous about the big Wall Street Journal article in 2008 that revealed his findings before they were published in a scientific journal. I hear that all the time from scientists — this notion that if they talk to the press before publication they will be ruined. And yet, in Hütter’s case, the article did exactly the opposite. It gave him legitimacy among HIV scientists and seemed to help him get published in a prestigious journal.
Since you now have a foot in both camps, how do you feel about scientists talking to the press about their work? Do you have any advice for scientists looking for recognition, or for journalists trying to get scoops?
NH: I sometimes wonder what would have become of Gero Hütter’s research without Mark Schoofs, the Wall Street Journal reporter. Consider this: Mark Schoofs was able to spot the importance of Timothy’s case in a way that thousands of researchers couldn’t. His coverage of the case influenced the New England Journal of Medicine to accept a paper they had previously rejected. Without that publication it’s hard to say where we would be today. Multiple agencies have cited that one paper as the reason they are funding HIV gene therapy. Mark Schoofs’s reporting may one day lead to millions of lives spared of HIV. So this is my advice to science journalists. Go for the stories you believe in, even if some researchers discourage you. Never forget that you’re an essential part of science and medicine and that your reporting may make all the difference. For scientists, it’s important that we recognize journalists as part of the scientific community and not be afraid to develop relationships.
VH: I like that advice!
There’s a tension in this story that probably exists in every story of a medical science breakthrough, and that’s the balance between hype and cynicism. Nobody wants to praise a result so much that it raises false hopes among patients, and yet, you don’t want to downplay science so much that the whole pursuit comes off as pointless. Any thoughts on how science writers should walk that tightrope?
NH: This is one of the reasons I felt the story had to be told as a book instead of an article. I needed the space to describe what’s happening in HIV medicine today. For me the best way to walk this tightrope was to keep the science sophisticated. To this end I discuss a range of topics: how HIV hides in the body, gene therapy, humanized mice and elite controllers. I wanted readers to feel as if they had enough information to assess for themselves. At the same time, I used interviews with experts in the field to give guidance. No one is ever going to agree with everything but finding that balance between hype and cynicism is so important.
VH: Is there another book in your future?
NH: Book writing is addictive. I’m working on my second book but I can’t talk about it quite yet.